One of the largest-ever early-brain development studies has just launched

Pregnancy and the first few years of life are a period of exponential brain growth and development. The unprecedented convergence of the opioid epidemic and COVID-19 pandemic provides a unique opportunity to shed light on how these early exposures during pregnancy may shape young children’s development and functioning at the population level. 

In the largest, most diverse and comprehensive study of its kind, Northwestern University, along with 24 other research sites across the United States and in collaboration with the Ann & Robert H. Lurie Children’s Hospital of Chicago, has embarked on a longitudinal study to assess how exposures to substances and environments before and after birth may alter early brain development. 

Funded by 10 institutes and offices at the National Institutes of Health, and the Helping to End Addiction Long-term Initiative, or NIH HEAL Initiative, and led by the National Institute on Drug Abuse (NIDA), the HEALthy Brain and Child Development (HBCD) Study will establish a large, diverse cohort of more than 7,500 pregnant people in their second trimester across a variety of regions and socioeconomic contexts and follow them and their children for up to a decade. The scientists will collect a large, well-characterized dataset that captures biologic, brain, behavior and social information about the children and their families, that will enable comparisons of brain development and behavioral outcomes of young children from a variety of environments. 

Northwestern’s HBCD site will be the only one to study these processes in Illinois families. It is co-directed by two scientists who are leaders in Northwestern’s Institute for Innovations in Developmental Sciences (DevSci): Elizabeth Norton (right), a developmental cognitive neuroscientist in Northwestern’s School of Communication, and Lauren Wakschlag (left), a developmental/clinical psychologist in Northwestern University Feinberg School of Medicine. 

“This will be by far the biggest study of early brain development ever to capture early life patterns at this unique point in time,” said Norton, an assistant professor in the Department of Communication Sciences and Disorders and the director of the Language, Education and Reading Neuroscience (LEARN) Lab at Northwestern. “Never before have we had the power to look at this big or diverse of a sample at the population level. We’re going to be able to examine early life vulnerability and protective factors in children growing up in all kinds of cities and towns across the country.”

Capturing ‘cinematic journey’ of brain development vs. ‘snapshots’

“We will know so much more about how brain development unfolds,” Norton said. “Right now, we have snapshots, but 10 years from now, we hope to have a greater picture of the whole cinematic journey, and a better understanding of how the structure of the brain relates to how it works.”

Findings from this study will be made accessible to scientists across the country in order to better determine urgent health needs, such as the current impact of the COVID-19 pandemic on development, or future health and environmental crises.

“One thing that is truly exciting about this study is its joint focus on risk and resilience, with the ultimate goal of creating strategies for promoting healthy outcomes despite early adversities for children from a broad range of backgrounds,” said Wakschlag, a professor and vice chair of medical social sciences at Northwestern. “Because development from pregnancy through the first years of life sets the critical foundation for lifelong health, learning and engagement with the world, capturing the many inflection points across this period will guide future personalized early life prevention in this period when children are most primed to benefit.”

Tracing early markers of variability in brain development 

Because the consortium will be capturing a representative sample of children across the country from birth, they’ll be able to follow and track various mental health conditions diagnoses among these children, including autism and dyslexia, and more common emotional and behavioral concerns, to shed light on the contributions of the prenatal environment to risk and resilience. Norton and Wakschlag have already been working on other studies that demarcate early markers of language and mental health problems and why they tend to co-occur.

Ensuring meaningful engagement for families

HBCD has been careful to put in place protections for study participants who disclose substance use so they’re not at risk of legal action as parents.  To take extra special care in this regard, a key member of the Northwestern team is Seema Shah, a lawyer and bioethicist. Shah will advise the team and co-lead the national consortium’s working group on Ethics and Law.

“For the past 18 months, we’ve been working hard to anticipate ethical issues and study best practices in research with groups that are vulnerable to sociolegal risks,” said Shah, an associate professor of pediatrics at Northwestern and the director of research ethics at Lurie Children’s Hospital, which is a collaborating partner with the Northwestern site. “We’ve applied the lessons we’ve learned by partnering with stakeholders early and often and designing the research to minimize risks and maximize respectful engagement with participants. There are no easy answers, but it is critical that we tackle these issues so infants and families who are most vulnerable can equitably and safely make their voices heard in the study. This research will break new ground scientifically while also attending to equity and ethics.”

Leading the way in ensuring meaningful and rewarding engagement for families at Northwestern’s HBCD site is co-investigator Marquita Lewis-Thames, assistant professor of medical social sciences and a member of Northwestern’s Center for Community Health. 

“By including the community voice in the research process as co-leaders on the project, we hope to implement research that increases academic and community understanding,” Lewis-Thames said. “There is an interdisciplinary clarion to activate researchers and include more diverse representation, leadership and perspectives of diverse groups.”